Dr Klimas's CDC talk on deconditioning & exercise in ME/CFS on Cort's blog

[Sasha]

Been looking forward to hearing about this!

Just noticed this post by Cort on his blog, just about to read it:

http://www.cortjohnson.org/blog/201...ng-exercise-and-recovery-the-klimas-cdc-talk/

 

[Chris]

It is very interesting--she puts the ANS right at the heart of ME, and she may be right; one key is to get the threshold between aerobic and anaerobic right: the simple formula offered (in the absence of real testing) is 220 minus your age x .6, and alas at 80 that puts mine at 84--kind of low!! She also suggests that exercise that does not include standing helps, and I have found that very short sessions on my rowing machine (1 min=200+ meters) seem to work pretty well, though they raise my HR over 120 briefly, and I seem able to cycle for 6-8 mins with a HR around 90 or so without triggering significant PENE. I think I will declare my threshhold at 94, and go from there.

I suspect there really is something here, and that perhaps one can adapt some of the basic notions to one's own experience. Certainly getting a HR monitor is a good idea. Chris

 

[Sushi]

I have a lot of questions about this! First, I was in top shape when my ANS very suddenly went wacko. No bedrest, no deconditioning.

Second, I do more or less follow Dr. Klimas's exercise recommendations (my choice is pilates lying down, with pilates machines and using a heart rater monitor), but, while I am preventing deconditioning, my "illness" is not improving from this. I have been doing this for several years.

I think there is a lot more to this story.

Sushi

 

[Sasha]

I have a lot of questions about this! First, I was in top shape when my ANS very suddenly went wacko. No bedrest, no deconditioning.

Second, I do more or less follow Dr. Klimas's exercise recommendations (my choice is pilates lying down, with pilates machines and using a heart rater monitor), but, while I am preventing deconditioning, my "illness" is not improving from this. I have been doing this for several years.

I think there is a lot more to this story.

Sushi

I think we've all got a lot of questions! Although I'm not convinced that it's deconditioning that causes the OI, if she thinks she's got a programme to reverse it I'll give it a go.

When you say you're following Dr Klimas's exercise recommendations, do you mean you're staying below your anaerobic threshold when doing pilates, or that you also use your HR monitor to make sure you're not going above it in your everyday activities?

 

[Sasha]

It is very interesting--she puts the ANS right at the heart of ME, and she may be right; one key is to get the threshold between aerobic and anaerobic right: the simple formula offered (in the absence of real testing) is 220 minus your age x .6, and alas at 80 that puts mine at 84--kind of low!! She also suggests that exercise that does not include standing helps, and I have found that very short sessions on my rowing machine (1 min=200+ meters) seem to work pretty well, though they raise my HR over 120 briefly, and I seem able to cycle for 6-8 mins with a HR around 90 or so without triggering significant PENE. I think I will declare my threshhold at 94, and go from there.

I suspect there really is something here, and that perhaps one can adapt some of the basic notions to one's own experience. Certainly getting a HR monitor is a good idea. Chris

Yes, 84 is not much to play with!

I looked into Staci Stevens's work on this a couple of years ago and just got confused but at the time bought both a heart monitor with chest strap and wrist display and a finger pulse oximeter.

I couldn't get on with the chest strap thing - too uncomfortable to wear all day and the wrist thing was incredibly complex to set up - I had to phone the company to set it up and then couldn't fathom it for the next session even though I'd made notes. The pulse oximeter was easy to use but the batteries went flat pretty quickly and I had bought a cheap one which was a sealed unit.

I've just ordered a new pulse oximeter from Ebay for £30 that allows you to replace batteries so looking forward to trying this again with a bit more guidance.

Dan Moricoli has created the Exercise Group here:

http://cfsknowledgecenter.ning.com/group/theexercisegroup

following Dr Klimas's protocol with instruction videos. You have to register to see it but that's very easy. It includes a video by Connie Sol showing how to do some exercises and not go over your anaerobic threshold.

It looks like a good resource - I haven't had a proper look.

 

[Sparrow]

I'm torn about all of this.

On the one side, like Sushi, deconditioning cannot explain the course of my illness. And I would hate for anything to put fuel on the fire of mistaken doctor impressions that if we just "exercised more" then everything would be okay.

On the other side, if those key points about exercise could get out (you shouldn't notice it, everyday activities count, don't go above your threshold, etc.), I think that could do a lot of good. Many doctors already think they should be pushing exercise. It would be a lot less harmful if they also knew to emphasize these limits.

It also might take some of the psychosocial thunder away and reclaim it for ourselves. Sure, some people responded to increased activity, and here's the biological reason why. Then it's not as much about trying to fight their data, just their interpretations of it (which is a LOT easier to do than helping people understand why the trials were so deeply flawed).

 

[Sasha]

I'm torn about all of this.

On the one side, like Sushi, deconditioning cannot explain the course of my illness. And I would hate for anything to put fuel on the fire of mistaken doctor impressions that if we just "exercised more" then everything would be okay.

On the other side, if those key points about exercise could get out (you shouldn't notice it, everyday activities count, don't go above your threshold, etc.), I think that could do a lot of good. Many doctors already think they should be pushing exercise. It would be a lot less harmful if they also knew to emphasize these limits.

It also might take some of the psychosocial thunder away and reclaim it for ourselves. Sure, some people responded to increased activity, and here's the biological reason why. Then it's not as much about trying to fight their data, just their interpretations of it (which is a LOT easier to do than helping people understand why the trials were so deeply flawed).

I think there are several separate issues coming out of Dr Klimas's work. One of them is that her research shows that:

• our anaerobic thresholds are unusually low
• if we go over them, our ANS tanks
• our ANS then takes the immune system with it
• we need tailored, expert assessment of the heart rate at which our anaerobic threshold occurs

None of that bears any relation to GET or the rationale behind GET. It's almost the opposite: it's based on lab evidence, patients get thresholds tested, activity is kept sub-threshold, and so on. No vague 'just gradually increase your activity'. It's very specific and based on proper testing.

 

[Sasha]

By the way, I'm going through those videos on cfsknowledge centre and making notes, they're so info-dense. I highly recommend them.

 

[Sushi]

I think we've all got a lot of questions! Although I'm not convinced that it's deconditioning that causes the OI, if she thinks she's got a programme to reverse it I'll give it a go.

When you say you're following Dr Klimas's exercise recommendations, do you mean you're staying below your anaerobic threshold when doing pilates, or that you also use your HR monitor to make sure you're not going above it in your everyday activities?

I keep my heart rate low during pilates (well below my AT). I don't wear it for everyday activities now, though when I did, it didn't tend to go over my estimated AT unless I did something like climb stairs (I don't have POTS but NMH). If I have to do something like climb stairs, I stop frequently, rest, and let my heart rate go down.

P.S. One thing does feel better from exercise--joint pain as I have EDs 3 and pilates helps me "keep aligned."

Sushi

 

[Chris]

Hi, Sushi and Sasha et al, I am going to post a longer reply, but if we can mention specific things here, I bought a HR monitor called Smart Sport through Mercola's site that functions both as a wrist watch--you just touch two sensors with moist fingers and in a few seconds get your HR--very simple, no problems; and it can also be worn with its chest strap to give a continuous reading. I have now watched the first three of the Klimas and Sol videos--interesting, but I think following such strict instructions would drive me into despair rather quickly, though I certainly respect the experience and skill of both of them.
Chris

 

[Sasha]

Hi, Sushi and Sasha et al, I am going to post a longer reply, but if we can mention specific things here, I bought a HR monitor called Smart Sport through Mercola's site that functions both as a wrist watch--you just touch two sensors with moist fingers and in a few seconds get your HR--very simple, no problems; and it can also be worn with its chest strap to give a continuous reading. I have now watched the first three of the Klimas and Sol videos--interesting, but I think following such strict instructions would drive me into despair rather quickly, though I certainly respect the experience and skill of both of them.
Chris

Hi Chris - yes, it's OK to mention specific products (as long as we're not selling them!) - people often do and it's very helpful.

I've watched those three videos now and I'm a bit confused! I need to think through what I've seen and read some of the threads in that section of the site.

I asked Cort, on his blog, whether he would collect questions and put them to Dr Klimas in an interview and he's interested in doing that. I think we'll all have a lot of questions!

 

[Sparrow]

None of that bears any relation to GET or the rationale behind GET. It's almost the opposite: it's based on lab evidence, patients get thresholds tested, activity is kept sub-threshold, and so on. No vague 'just gradually increase your activity'. It's very specific and based on proper testing.

I have the utmost respect for Dr. Klimas, and highly support her work. I'm not trying to knock her at all, just concerned for the full picture. I wanted to clarify that I wasn't trying to imply that her work was like the GET recommendations, but I do feel like it's a distinction many doctor's aren't likely to make. They don't even seem to get actual GET right most of the time (which does involve setting limits, not being over-active, etc.). I think many of them have heard that "exercise may help" and don't bother to get into the details. They just assume that more is better, which can be dangerous.

I'm hoping the details of what Klimas is proposing get circulated well, rather than just the "exercise may cure people" piece of the message. I also hope that it doesn't cause more problems with people assuming that since exercise may be helpful in improving symptoms, then a lack of exercise was the cause. Because that one just doesn't add up. That's the only piece of what was presented there that actually rubbed me the wrong way - not enough emphasis that it's not just deconditioning that's our problem. I think there must be more to it than straightforward deconditioning, since like many others my issues came on and worsened while I was maintaining an active lifestyle. I wasn't deconditioned at all. In fact, the crash that's left me bed bound was the result of forcing exercise.

 

[SOC]

Having 2 people in the household provides a different perspective of ME/CFS issues -- or maybe it just adds more confusion.

My daughter hasn't become deconditioned in the traditional sense during her illness. She remained able to walk around campus, up and down stairs and so on. She did this every day through most of her illness. What she suddenly couldn't do was sports like tennis or running. Nevertheless, she had worse OI symptoms than I ever did.

OTOH, I was much more ill than she was, and for longer. I was bedbound or largely recliner-bound for 3 years or more. My OI symptoms developed late in my illness and are much subtler.

I can easily see that my OI symptoms could have developed as the result of deconditioning. In my daughter's case that seems extremely unlikely. She didn't start to limit her activities until after she developed OI symptoms fairly early -- and she stayed reasonably active even then.

My best thinking is that a neurological infection can cause dysautonomia issues all by itself. My daughter's OI issues cleared up when her HHV-6 infection was kicked back into latency. However, some of us may become deconditioned as the result of our illness and once we've dealt with all the infections, we might still have to rehabilitate if energy issues persist.

I'm going to have to reread Cort's article to better understand/remember whether Dr K thinks we get back our aerobic capacity with this tiny exercise program, or if we're just getting some improvement through training.

 

[Andrew]

A few thoughts here:

1. Because so many highly conditioned people (including athletes) come down with CFS, it is hard to believe that the cause is deconditioning. I think they are incorrectly describing what they are doing. From what they say, too much activity will also cause problems. So it is not cause and effect based on not enough conditioning. It is cause and effect based on activity levels that either exceed or fall short of optimal levels for the body. It is aerobic energy management that includes guidelines and measures so the patient can determine what do on any given day.

I think the problem with some of these researchers is they are not conceptualizing the total of what they are telling us to do. What they are overlooking is they are not simply telling us to exercise more -- they are also telling us to exercise less. They are telling us to cut back or increase depending on the particulars of our threshold on any given day. But the way it gets talked about, it gives the impression that exercise = good.

2. I followed the links to the movies that show how this exercise program worked. I can see right off that some people would not even be able to do one repetition of some of those stretching movements. So this is a context as well.

3. I'm not in a relationship, but this whole heart monitoring thing has me thinking. How does this relate to physical intimacy. Sometimes the heart can start beating fast from prolonged kissing. Even while lying down. In other words, increased heart rate with no anaerobic exercise. I wonder how that plays into this.

 

[Seven7]

Andrew,

I cannot exercise without PEM but I can be intimate, A LOT and no PEM , and I never feel bad afterwords. Very good question. By the way my HR goes up the roof (during) and sometimes I feel I am going to pass out (when done).


7

 

[heapsreal]

I think anyone where activity is greatly reduced is going to have a certain amount of decondfitioning but i think in cfs/me the problem is being able to exercise. I think higher functioning cfsers can do a controlled type exercise routine but only if adequate time is given to recover from it. But also the higher function cfser thats working will be too wiped out for exercise but then again maybe they dont need it yet. I think it comes down to finding the right group that it will help and all things have to be in place especially the ability to adequately recover, i think thats the big thing and also not putting someone into a relapse, tricky??

 

[heapsreal]

Andrew,

I cannot exercise without PEM but I can be intimate, A LOT and no PEM , and I never feel bad afterwords. Very good question. By the way my HR goes up the roof (during) and sometimes I feel I am going to pass out (when done).


7

Maybe just use intimcy as exercise, 30min 3 times a week and slowly increase and then enter the Boston intimcy marathon lol. sounds like fun, my heart rates up lol. rememebr hydrate and chap stick???

 

[jimells]

sometimes I feel I am going to pass out (when done).

Isn't this a good thing??

 

[jimells]

Dr. Klimas statement (paraphrased) that “Deconditioning can explain much of the dysautonomia (autonomic nervous system problems) present in CFS” definitely raised eyebrows.

I can only speak for myself, but if exercise were the cure I would've never gotten sick. How does deconditioning explain sudden partial remissions, that subsequently relapses just as quickly? This appears to be a very common pattern with this illness. If I wasn't so lazy, I'd look for research that suggests the frequency of this pattern, assuming there is some...

 

[Sasha]

I can only speak for myself, but if exercise were the cure I would've never gotten sick. How does deconditioning explain sudden partial remissions, that subsequently relapses just as quickly? This appears to be a very common pattern with this illness. If I wasn't so lazy, I'd look for research that suggests the frequency of this pattern, assuming there is some...

Agreed but she seems to be saying that deconditioning can account for part of the dysautonomia, not all of the dystautonomia and not all or part of the other stuff (mitochondrial dysfunction, etc. etc.) that make us unable to function normally. She's maybe saying that once you're ill, and have been forced to rest, you'll get some deconditioning and that will add to any disease-induced dysautomonia.

I'm hoping we'll get more clarity (and maybe she'll get more feedback) on this.

Bottom line, if well-defined PWME (and who better to diagnose a PWME than Dr Klimas) are getting at least some improvement on this, the theory behind it may be fuzzy or just wrong but it the treatment works. even just gives a few percentage points improvement, I'm interested...